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Young people's life goals should be given as much attention as their blood sugar levels in diabetes appointments. New research suggests that more focus on their interests and priorities would increase their engagement with diabetes services. This is especially important for those from disadvantaged or ethnic minority communities, who are most likely to miss appointments and be considered ‘disengaged’ by their clinician.

This study included children and young people who were labelled 'disengaged' with their diabetes care. Interviews explored what they would like to change about current diabetes services.

Young people said they wanted to fit in socially, and to be able to take part in religious festivities (fasting, or eating traditional foods). They had more trouble controlling their blood sugar around stressful times, such as exams. They felt criticised and as if they had failed if their blood sugar control was not good at an appointment.

Consultations often focus solely on blood sugar levels. This research suggests healthcare teams need to be more aware of the wider priorities of children and young people. Appointments should be used to discuss what the child or young person wants to achieve and what they have going on in their lives. Professionals could use this information to aim for a more realistic blood sugar target.

Stressful times have an impact on blood glucose levels, and hormones can cause spikes. Both healthcare teams and young people need to understand the impact of everyday life on diabetes control. This could empower children and young people to engage in their diabetes appointments from an early age.

Further information on local diabetes information and support services is available on the NHS website.

What’s the issue?

In the UK in 2019, around 36,000 children and young people under 19 years had diabetes. This means either they cannot produce a hormone called insulin (which controls blood sugar levels) or the insulin has become ineffective.

Good control of blood sugar levels reduces the risk of long-term complications, including eye and kidney disease. The focus of diabetes appointments has therefore been to help young people control their blood sugar.

Children and young people with diabetes miss more appointments than other age groups. In addition, many are lost from the system when they move from child to adult services.

Previous research found that children and young people often feel ‘silenced’ during diabetes appointments. Parents who want to be in charge of their child’s diabetes care plan can make this worse.

A diabetes care plan includes activities such as checking blood sugar levels, eating a diet low in saturated fat, and checking feet to make sure there are no sores. However, self-care for children and young people is more complex than this. They are going through puberty, establishing friendships, taking exams, and so on, which can make it difficult for them to adhere to such plans.

The researchers wanted to hear from children and young people from socially disadvantaged and ethnic minority backgrounds. Both these groups have high rates of diabetes and experience health inequalities. They believe that listening to these young people is a first step in overcoming barriers to diabetes care and improving self-care in these groups.

What’s new?

The research team worked with young people (16-25 years) who had diabetes to design the study. These young investigators reviewed all study documents, including the study design, the information sheets for participants and the interview outline.

The study itself included 22 young people (10-19 years) with type 1 or 2 diabetes. They came from ethnically diverse backgrounds and lived in one of two disadvantaged boroughs in London. Most (64%) were girls, and most had type 1 diabetes. They had all been described by their clinicians as ‘disengaged’ from diabetes services, meaning they had either missed appointments or were not adhering to their diabetes care plan.

Participants were interviewed, usually in their own homes. They could choose where and when interviews took place. They were asked about their experience of diabetes, including changes they would like to see and what an ideal diabetes service would look like.

Four themes emerged.

  1. Stigma

Most wanted to fit in with peers. Young people who spent a lot of time outside with friends were especially keen to hide their vulnerabilities. They often felt scrutinised when they were at the clinic.

  1. Faith-based identity

Some had a belief system that influenced their self-care; this could have a positive or negative impact on their diabetes control. For instance, Muslim participants did not drink alcohol (positive) but wanted to fast and feast around Ramadan (negative). Many other festivals and rituals required a break from routine eating patterns.

  1. Support in schools

School environments influenced decisions about self-care. Friends could be a source of support; teachers and other staff could remind pupils to test their blood and to eat regularly. A special room where children can inject insulin also helped.

Young people found their blood sugar more difficult to control at stressful times such as during exams. Going to university was challenging for them because of the need to juggle studies with organising doctors’ appointments and prescriptions.

  1. Self-management

Young people knew they needed to make changes because of their diabetes. This could mean eating less to avoid having to reinject with insulin, for example, or limiting hobbies such as intense boxing training. Some felt angry about needing to make changes. In addition, many did not want to go to appointments if they knew their blood sugar levels might be high. This could lead to them being wrongly labelled as ‘disengaged’ from services.

Young people and clinicians were both unwilling to discuss feelings. This meant opportunities were missed to support young people to keep up with activities they liked.

Why is this important?

This research shows the importance of listening to young people, especially when they become disengaged with healthcare services. The interviews highlighted missed opportunities to educate and support young people with diabetes. The study concluded that healthcare professionals should give more priority to young people’s life plans and understand that life plans are as important to them as their diabetes control.

Better understanding of the conflicting pressures felt by young people with diabetes could help healthcare teams remove barriers to good care. Plans need to be more realistic, deviations from plans should be expected, and young people should not be criticised or reprimanded for having poor diabetes control.

Stressful life events and changing hormone levels can cause high blood sugar, regardless of whether a plan is being followed strictly. Exploring the reasons behind poor control and encouraging discussion about forthcoming or recent events in the context of diabetes, could support young people.

The move into adult services and self-care often coincided with young people disengaging with services. Researchers recommended better co-ordination to support this transition.

The study also noted that teachers and school staff, particularly those in less advantaged areas, were well-placed to support young people but lacked training in diabetes.

What’s next?

The study is part of a larger project that has informed commissioning guidelines for diabetes services for young people in poor and ethnically diverse communities in London. Its findings indicate that this group of young people lack trust in healthcare professionals. This study included interviews with 22 young people; a further 25 agreed to an interview but did not attend. Better understanding of the reasons for this could provide additional insights into barriers to engaging with diabetes services.

NHS policy recommends person-centred care plans in England. However, person-centred care is offered in an ad hoc manner; it is not routinely delivered. This study recommends that healthcare professionals use appointments to encourage trust. Frank and honest discussions covering lifestyles, behaviour and identity would be more helpful than focusing on blood sugar levels.

The researchers hope their recommendations will improve engagement with diabetes services. They say that professionals and young people working together could set realistic expectations and make best use of medical resources.

You may be interested to read

This Alert is based on: Sharpe D, and others. Supporting disengaged children and young people living with diabetes to self-care: a qualitative study in a socially disadvantaged and ethnically diverse urban area. BMJ Open 2021;11:e046989

A study from which the present study emerged: Sharpe D, and others. ‘It’s my diabetes': Co-production in practice with young people in delivering a ‘perfect’ care pathway for diabetes. Research for All 2018;2:289–303

Young Commissioners Model: Co-designing community based services - a video about including ‘young commissioners’ to co-design research.

 

Funding: This study was supported by the NHIR North Thames Collaborations for Leadership in Applied Health Research and Care.

Conflicts of Interest: The study authors declare no conflicts of interest.

Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.


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Commentaries

Study author

We wanted to understand what was stopping children and young people from engaging with diabetes services. We involved some young people who had diabetes as young researchers to help us design the study. Together, we realised that the narrative needed to be turned on its head: the focus until now had been on how we can make children and young people take ownership of their diabetes. In fact, we realised that we needed to find out what we can learn from this group to better support them.

Often children and young people did not see themselves as disengaged. This indicates a larger problem – the lack of communication between healthcare professionals and the person they are caring for. Missing an appointment or having poor control does not necessarily mean someone is not engaged with their diabetes care.

Child diabetes services can be paternalistic. The child is often quiet and spoken for by their parents. This passive role is not good for the child and does not foster engagement when it comes to them managing their own care. Encouraging children to be engaged in their care from an early age is key.

We recommend a staged transition between child and adult services; it should not be sudden. Empowering children and young people to discuss with the diabetes care team what they want to do is critical. This will help diabetes to be controlled without the child or young person feeling they are missing out on a normal social life.

Darren Sharpe, Senior Research Fellow, University of East London 

Association for Young People’s Health 

We warmly welcome this study from Darren Sharpe and the East London team. Diabetes UK has estimated that there are approximately 36,000 children and young people under the age of 19 who have diabetes. The peak age for diagnosis of Type 1 diabetes is between 9 and 14 years of age. Adolescence is thus a key period for adjusting to this life-time condition and helping put support in place to enable young people to cope and thrive.

Knowing how best to help children and young people is impossible without understanding what they think. The study stresses the importance of listening to young people and seeing ‘disengagement’ from their perspective. Co-producing research and services is great way of doing this, and it requires investment and skill. This was one of the conclusions from a separate NIHR funded study (led by Sarah Finer of Queen Mary, University of London) where we explored the feasibility of co-producing group clinics with young people to meet the complex health and social care needs of young adults with diabetes in an ethnically diverse, socioeconomically deprived population. There was lots of overlap with the findings from Darren Sharpe’s work.

We particularly note the reference to the overlap between physical health and mental wellbeing; something that young people have told us for as long as AYPH has existed. The National Paediatric Diabetes Audit has reported that over a third (39.1%) of children and young people with Type 1 diabetes were assessed as requiring additional psychological or CAMHS support. Meeting the needs of these young people in the round is critical to engaging them in services.

Ann Hagell, Research Lead, Association for Young People’s Health 

Member of the public

This paper has no direct impact for me, but my late husband had type 2 diabetes. I am therefore aware of the complications that can arise from poor care and that some discipline is needed for diabetes care.

Structural barriers need to be addressed in a way that appeals to children and young people. The roadmap to implementing changes should be costed so it can be presented to commissioners. Any cost-benefit analysis would need to be long-term; commissioners may be reluctant to invest unless or until they have more assurance of better outcomes.

It would be useful to provide more information to the public in contact with children and young people with diabetes, including teachers and faith leaders. More appealing information designed with children and young people in mind could help them to understand the risks and take responsibility for their self-care. Persuading parents to stand back to allow self-care will be hard. Self-management requires discipline and that needs to be encouraged.

I wonder if different cultural backgrounds will have differential effects, not only in the findings but in terms of what is included in the proposed life plans. The small sample attempted to cover many variables. The fact that only 36% were boys says a lot to me about their willingness to participate – or co-operate – and suggests there could still be unknown factors at play.

Even after considerable effort in tailoring life plans, how compliant will teenagers be if they can’t – or won’t – recognise the health risks when setting their priorities? I’d like to suggest that involving a behavioural scientist might help in devising and tailoring the individual life plans.

Diana Robinson, Public Contributor, Northeast 

Researcher 

Children and young people need holistic care to address their wellbeing. Life priorities may interfere with their engagement with health services, and this must be acknowledged.

This group is often under-represented in research. Although the sample size did not fully represent the diversity of the population, the authors conducted a robust qualitative study and involved patients and the public. The findings highlight the importance of peer support, tailored diabetes care, and other important factors that would facilitate and sustain the engagement of this population with health services.

Michelle Hadjiconstantinou, Research Fellow, Diabetes Research Centre, University of Leicester 

Academic clinician

This is one of the first papers to try and understand the perspective of disadvantaged young people with diabetes who are ‘disengaging’ with their care providers. It explores why young peoples’ priorities might not align directly with a medical model of care, and takes especial account of social and heritage background.

Whether the findings solely apply to young people from ethnic minority and disadvantaged backgrounds is a moot point. In adolescence, life priorities often take centre stage, and many of the comments about the stigma of disease and peer-group relations probably apply to others, regardless of their background.

These young people valued support in schools, which could be a useful avenue for improving their engagement with self-care. Another suggestion was for the diabetes team to provide additional education and engagement for parents. These interventions might have particular benefit for disadvantaged communities.

A set of bespoke toolkits, to improve engagement in a number of settings for disadvantaged young people, would help. These will need to be co-developed with young people and their families to ensure relevance, acceptability and impact.

Beyond this study, it would be interesting to explore the views of engaged young people from the same backgrounds. This would allow us to estimate which views are universally shared and which relate to disengagement. From this paper alone, we cannot judge if these perspectives explain disengagement or are held more widely. Other unexplored issues might lead to poor outcomes.

Julian Hamilton-Shield, Clinician, Bristol Royal Hospital for Children and Bristol NIHR Biomedical Research Centre 

Academic clinician

Policies on patient-centred care planning in England are largely generic and mostly designed for adults. If access to diabetes care for children and young adults is to be improved, more specific guidance is needed. A simplified consensus statement could help healthcare teams drive service improvement.

Sam Westall, Clinical Research Fellow, St Helens and Knowsley Teaching Hospitals NHS Trust  

Diabetes specialist 

This research reads as a microcosm of the challenges we face in east London. The young people with diabetes who attend our service come from one of the most ethnically-mixed and socially-economically deprived areas of the UK. Our team strongly believes that it is our role to ensure that their physical and mental health outcomes are as good as their wealthier neighbours’. By reaching out to young people, with the help of our youth worker and our peer support group, we have started to improve engagement. Our data on missed appointments, unplanned admissions and diabetes-associated distress show that these interventions can work.

However, there is still a long way to go. We hope that projects like this from the NIHR bring attention to the depth and scale of the problem and the continued investment that is needed in order to prevent the huge social, financial and personal costs of young people failing to live healthy and happy lives.

Meera Ladwa, Clinical Lead for Young Adult Diabetes Services, Newham University Hospital Barts Health NHS Trust 

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